Saturday, September 19, 2009

Tomas's GJ tube is working nicely. He had some stomach pain during the first 2 days, I think from just clearing out anything that was left from before the tube was placed. After that he was great and very happy.

Then came Wednesday.
He had a barium swallow study. The speech pathologist mixes different consistencies of formula and I give it to him in a bottle. He aspirated right away on the regular formula, pooled the liquid at the back of his throat (which greatly increases probability of aspiration) for the formula the consistency of nectar. However, he did wonderful with the stuff that was as thick as honey. He had about 30 swallows and never aspirated. He also had some cereal and did fine with that. This is great news and he has been cleared by speech to start with oral feeds no thinner than honey consistency. You'd think I'd have been dancing for joy in the radiology dep't. BUT when they turned off the cameras and I was left with him he began coughing and sputtering due to his reflux, and he was fussy baby for the next 12 hours because he had food in his stomach and was uncomfortable. Also, because he had aspirated early on in the study he had a very hard time stabilizing his O2 so he ended up on oxygen support for the rest of the day until he was able to clear out his lungs.
His pulmonologist and the speech therapist who comes to the house are going to have a conference call on Tuesday to plan out a course for him, but I also want to run everything by GI before we start anything because here is the big question: Is his discomfort from having food in his stomach worth the trouble in order to teach him how to eat, or is it a signal of a larger problem that should preclude him from eating altogether? I haven't got a satisfactory answer from the GI doctor. He definitely leans toward the DO NOT FEED approach and that's why he put in the GJ. I know it has something to do with the hernias and the reflux but I am not seeing the big picture. Oh, and throw into the mix the news that he has Bile Reflux as well (gall bladder normally dumps bile into the intestines right where the stomach joins, but his is refluxing back up into the stomach - joy) and I am totally lost as to what to do next. I pray that his new GI (appt. on Wed.) can map out a road for me, or at the very least clear up all the confusion I have now.

Yesterday I took Tomas in for his sweat test to rule out Cystic Fibrosis. While I was in admissions filling out paper work, I hear him working on his diaper. Wonderful, I know it is going to be a few minutes before I get to him. Finally, I get upstairs to the lab and take him into the bathroom, lift up his blanket and it is EVERYWHERE!!! All over his WHITE shoes, his clothes, his stroller, just everywhere. It is one of those moments when you just don't know where to begin. About halfway through I ran out of wipes and had to switch to paper towels. Just a disaster. Change of clothes got left in the back of the car, not the diaper bag. so trailer baby (diaper and t-shirt) went to the lab. Then when I went to lift him up for his test I caught his tube on the stroller. He was crying, I felt miserable. That took about 20 minutes before he felt better. I still feel like (blank). The test was some electrodes strapped to his leg that give the sensation of your leg being asleep. He had to keep it on for 5 minutes. He was so good, playing and laughing with the nurse. After that, she wrapped his leg with gauze and plastic to collect sweat and we had a 1/2 hour to kill. Later, the nurse collected the gauze and weighed it, and there wasn't enough sweat. I asked her if we just repeat it and she said no, that the doctor has to re-order. So the whole morning was for nothing. So frustrating.

As for the rest of us, Olivia and Victoria have started Little Flowers (kind of like a Catholic girl scouts - sort of, but enough to give you an idea), and have joined the children's choir at church. The sun has come out finally after 8 days of overcast/rain.

The upcoming week has a pulmonology appt., speech therapy, oncology, and an appt. with the new GI. Somehow we fit school in here and there and life rolls along. I could really use a laundry fairy though.

God bless,

1 comment:

  1. Your dear friend, Eunice, keeps us posted and we are all praying for your family and dear little Tomas. I shared 'part' of this last post with the prayer team. As honestly, it seems unbelievable that one can keep such a good attitude thru it. Shows what a Godly woman you are and such an encouragement.. you have several that want to come get your laundry, though! .. Hugs and prayers from us at fellowshipChurch w/the Hand in Hand prayer team ...stephanie

    Here is a comment I got from one of our dear prayer team members, thought I would share with you.
    "I felt every tug, every pull, every emotion as I read this below. Bless,
    bless, bless their precious hearts! And as I read, I was so humbled, as I am so many times by words shared by others. And I'm thinking when we feel so inadequate, like things such as feelings we have shared in times such as these, and we come to a place called "for nothing" God steps in and says, "but I am here. You are worth everything to me and I will see you through this moment, this day". Oh how hard it can be to "trust" sometimes for we are so human and tend to take the loads and burdens upon ourselves instead of saying, "here, God, you take this it's bigger than me". However, once we do step over that line where "trust" lies, there is peace, joy, and comfort.
    I see that even with the words of this Mom! "Life rolls along" and humor is still there with the "laundry fairy". I see "strength, energy and exhaustion" in all this, yet I know who is in control and He will see each of them through every obstacle. I just wanted to share what went through my own heart as this Mom deals with a completely different set of "things" than I do. Many times I can't type as fast as I'm thinking so I am hoping this made sense to you as you read and you could feel my own heart. ...